Patient Stories

Testimonials from Caregivers and Patients Treated with Sucraid® (sacrosidase) Oral Solution

Hearing the stories of individuals who have CSID and reading about their experiences provide hope for others suffering from the same disorder. All – including the parents of infants, toddlers, and young children – speak of the relief of finally getting a correct diagnosis and finding a medication, Sucraid, that has helped to alleviate the symptoms of CSID.

Testimonials

Patient Story

Now with the Sucraid, it’s opened up more options for me. With the diagnosis, I understand now what was causing me to have symptoms … But because I have Sucraid, I can eat things that do have some sucrose and it keeps me from having pain when I eat them.

Stephanie, Patient Treated With Sucraid

Sucraid helps by doing what our bodies cannot do very well – digest sucrose – and that could mean fewer symptoms and more options. Sucraid provides us with more food options and with the possibility of larger quantities within those food choices. Starting Sucraid brought the ability to tolerate such things as fruits other than berries and lemon, the ability to avoid carefully scrutinizing food content and constant sucrose-gram counting, and eventually the freedom to occasionally eat more popular, sucrose-containing foods like pizza. Sucraid also brought dependence with it, which is sometimes hard to accept as you carry your medicine cooler everywhere, but with the acceptance of that dependence comes more freedom.”

Aileen, Michigan

When my son was first diagnosed with CSID and I realized how much his diet needed to be restricted, I thought it might be near impossible and I feared his diet would be so restricted that it would be unhealthy. And I was already experienced at doing restricted diets with other family members. Sucraid made my son’s diet (and my life!) more manageable. After a year or so with Sucraid therapy, my son felt like he could eat more like a normal kid!”

Kristi, New York

Overall, I cannot thank QOL Medical enough for everything – the availability and overall assistance in relation to what Sucraid has done for me.”

Debra, Minnesota

My son is now able to drink infant formula and eat sucrose-containing foods that would normally cause severe, frequent episodes of diarrhea and weight loss. As a mother, it is devastating to watch your baby deteriorate before your eyes and not know what is causing him to react to certain foods in this horrifying way. To get the proper diagnosis and then to be able to manage his diet with the right foods and Sucraid has been just what we needed.”

Briana, Florida

Sucraid means a lot to our family because Ashtyn is able to eat more foods with Sucraid.”

Kelli, Texas

We give our toddler son a dose of Sucraid (28 drops) with each bottle/meal. We have seen a dramatic change in the past 2 months, from 14 to 15 BMs a day to 1 to 3 at most. He has been able to gain weight, which the doctor says has helped him to grow.”

Briana, Florida

Read More Testimonials

For us, Sucraid is the difference between strict diet adherence and a more normal diet. Sucraid means more freedom of choice for us.”

Aileen, Michigan

I like Sucraid because then my tummy doesn’t hurt.”

Anni, 10-year-old patient, Michigan

With Sucraid, I have more options to eat the foods I want to eat from anywhere, like what I cook at home, to eating out, and in different parts of the country and their cuisine.”

Cole, Oregon

Sucraid has allowed me to expand the variety of foods that I eat. Sucraid has made it possible for me to eat out.”

Debra, Minnesota

My family and I have had tremendous support from QOL’s support programs, especially from their assistance program to make it affordable for my family. Also, from their pharmacists, nurses, and whomever we talk to when refilling my prescription – they always go the extra step.”

Cole, Oregon

The patient support has been absolutely phenomenal and helpful.”

Meredith, Utah

QOL Medical has been amazing. They have assisted me so much throughout the years I have been on Sucraid. Through the QOL assistance program, I have been able to have peace of mind that I will always be able to get Sucraid. I have been through career and insurance changes over the years. I am confident that I will continue to seamlessly be able to receive Sucraid, and that they will assist me not only financially, but also be an advocate if needed in dealing with the insurance company.”

Debra, Minnesota

Sucraid has helped Ashtyn with having less loose stools. She has been able to gain and maintain weight since starting Sucraid.”

Kelli, Texas

I have had the best experience with QOL Medical’s support program. All of my questions and concerns have been answered during this process. Brandi Rabon, the manager of One Patient Services, has made an unbearable situation bearable for my entire family. She has given us the resources, support, and tools to manage my son’s CSID. Thanks to her, we do not feel alone in this.”

Briana, Florida

The folks at QOL Medical go above and beyond. They have been more helpful and more effective than any insurance company, medical supply company, or union representative I have ever dealt with. Whenever I have had a concern, I have never had to make more than one phone call. They have dealt with my insurance company and made my involvement effortless and painless.”

Kristi, New York

*Actual, unscripted, patient testimonials. Results and side effects may vary by individual.

Videos

Stephanie Mass

Diagnosed at Age 36

Addie Rabon

Diagnosed at Age 20 Months

James O’ Daniel

Diagnosed at Age 2 Years

Making Informed Choices with CSID

QOL Medical contributed financially to the production and air time of this video, which appeared on the Lifetime Television Network. Brandi Rabon, who appears in this video, is a QOL Medical employee. Dr. William R. Treem, who also appears in this video, is a pediatric gastroenterologist who has studied and treated patients with CSID for years. At the time this video was made, Dr. Treem was a paid consultant of QOL Medical and was compensated for his time in participating in this video. Please see the indication and important safety information for Sucraid® (sacrosidase) Oral Solution below.

Share Your Story

QOL Medical is interested to hear from those affected by Congenital Sucrase-Isomaltase Deficiency, patients and caregivers, regarding their experience with Sucraid. Please click below to share your story.

Important Safety Information for Sucraid® (sacrosidase) Oral Solution

  • Sucraid may cause a serious allergic reaction. Patients should stop taking Sucraid and get emergency help immediately if any of the following side effects occur: difficulty breathing, wheezing, or swelling of the face. Care should be taken when administering initial doses of Sucraid to observe any signs of acute hypersensitivity reaction.
  • Do not use Sucraid (sacrosidase) Oral Solution with patients known to be hypersensitive to yeast, yeast products, papain, or glycerin (glycerol).
  • Although Sucraid provides replacement therapy for the deficient sucrase, it does not provide specific replacement therapy for the deficient isomaltase.
  • Adverse reactions as a result of taking Sucraid may include worse abdominal pain, vomiting, nausea, diarrhea, constipation, difficulty sleeping, headache, nervousness, and dehydration.
  • Before prescribing Sucraid to diabetic patients, the physician should consider that Sucraid will enable sucrose hydrolysis and the absorption of those hydrolysis products, glucose and fructose.
  • The effects of Sucraid have not been evaluated in patients with secondary (acquired) disaccharidase deficiency.
  • DO NOT HEAT SOLUTIONS CONTAINING SUCRAID. Do not put Sucraid in warm or hot fluids. Do not reconstitute or consume Sucraid with fruit juice since the acidity of the juice may reduce the enzyme activity of Sucraid. Half of the reconstituted Sucraid should be taken at the beginning of the meal or snack and the other half during the meal or snack.
  • Sucraid should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

Indication

Sucraid®(sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID).